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Managing an IgA nephropathy (IgAN) diagnosis, whether it's yours or that of a loved one, can feel incredibly overwhelming, isolating, and just plain difficult. These five content creators living with IgAN are giving hope to the community by sharing their real experiences, tips, and resources to remind you you’re not alone.
Although there is a large and diversified group of Asian Americans and Pacific Islanders (AAPI) in the United States, clinical trials and medical research frequently underrepresent this group. This underrepresentation result in a lack of knowledge about how particular medications and therapies affect AAPI people, potentially resulting in less effective or even hazardous medical interventions.
Sarah You is an IgAN Change Champion who has used her challenges with IgA nephropathy to help others. Sarah was diagnosed with IgAN when she was 21 years old, living as an international student in the US. She flew back to receive treatment and be with her family in Korea following her diagnosis. Now that she understands how to manage her IgAN, she has a master's degree in immunology and is currently applying to medical schools so she can be a support system for other rare disease patients.
IgA nephropathy (IgAN) is a type of kidney disease that affects the glomeruli, the tiny filtering units within the kidneys. To diagnose and monitor IgAN, patients typically undergo a range of tests, including blood labs for kidney diseases, urine tests for kidney disease, and imaging studies.
In the US, nearly two million kidney biopsies are performed each year at a rate of 175 procedures per million population. Kidney biopsies can reveal important information about kidney function and inform nephrologists about the possible cause of symptoms that brought the patient in for a visit in the first place.
Managing a chronic condition can be challenging, but there are tools to help patients monitor their health and manage their symptoms. From wearable health monitors to online medical record platforms, blood pressure monitors, symptom-tracking apps, and diet-tracking tools, patients have a variety of resources at their disposal. Here are six tools that can help you take control of your health and manage your IgA Nephropathy:
There are many organizations dedicated to helping patients with IgA nephropathy. Here are five of the top organizations that IgA nephropathy patients can turn to for support and resources.
If you’ve been diagnosed with IgAN or suspect that you may have the disease, finding a knowledgeable and experienced nephrologist or IgAN specialist is crucial to managing your symptoms and receiving appropriate treatment. But where do you start?
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